For 25+ years I’ve been a community networker & group process consultant. I believe that people today are starved for community—for a greater sense of belonging and connection—and I’ve dedicated my life to making available as widely as possible the tools and inspiration of cooperative living. I’m on the road half the time teaching groups consensus, meeting facilitation, and how to work with conflict. This blog is a collection of my observations and musings along the way.

Saturday, February 10, 2018

I should have known what was coming when I started needing to pull in my belt another notch to keep my pants from falling down.

At my monthly oncologist visit last Thursday I weighed in at 161, which was down about nine lbs from January. While precipitous weight loss is not necessarily a good sign, I like this new weight better (who needs to schlepp around an extra nine pounds?) and it seemed a natural consequence of my suffering through respiratory troubles in January, during which I didn't have much appetite.

Given that I was tipping the scales at around 210 lbs on the eve of discovering my multiple myeloma two years ago, this is a much smaller me, and I like it.

Also, I'm breathing much better this week, my cough (the lingering residue of a cold in mid-December) is almost gone, and I am otherwise feeling fine. And that includes visiting a dermatologist (Dr Brown) the other day to look over a variety of skin oddities that my primary doctor (Dr Mast) thought were prudent to examine. I directed Brown to five spots on my body, all of which he judged benign (whew), though in the process he found two other spots that weren't even on my radar that he felt uncertain enough about to biopsy. (While he suspects they were most likely benign as well, why take the chance?) With skin cancer it's almost always treatable if you catch it soon enough, so I feel I'm in good hands on that account.

Dancing with Medicare Part D
More in my health consciousness right now is a switch I'll be making in chemotherapy protocols, going from infusion therapy (Kyprolis) to oral therapy. This will allow me to stay on course while on the road (infusion therapy requires visits to my local hospital and that's been difficult to choreograph when I'm out of state two weeks per month). In addition, I was experiencing some slippage in effectiveness with Kyprolis, so it was time for a change. From a health and quality-of-life standpoint this is a step forward. From a financial management standpoint, however, not so much.

My infusion therapy has been 100% covered by my insurance, because it was viewed as a medical cost (covered under Medicare Part B), but oral therapy is seen as a drug cost, (covered under Medicare Part D) and is subject to a 20% copay. Because the list prices for my drugs (Revlimid and Ninlaro) are through the roof I anticipate going through a sequence where I first have to pony up for the copay, until my out-of-pocket costs reach $3750. After that I go into "gap" coverage, which means I have to survive an additional $5000 in out-of-pocket payments before I get out of the gap. Following that I fall into the protection of catastrophic coverage, where my copays will drop to little or nothing, depending on the drugs.

Thus, I'm looking down the barrel of $8750 in health care costs to get through the rest of 2018 (none of which I faced last year, when all of my treatments were through infusion). Then next year, if I continue with oral therapy, I'll go through it all over again. It's quite the gauntlet.

Under Obama there were plans in place to gradually close the gap (also known as the "donut hole") for Part D coverage, but there's no knowing what will happen under Trump and his Republican majority. They have lusted after dismantling the Affordable Care Act, but have so far been unable to do more than chip away at the edges. So we'll see what 2019 brings. It may be a better deal for me, or it may be worse.

Fortunately, even though I have cancer, I've recovered enough stamina and all of cognitive ability—such that I've been able to return to work as a process consultant and teacher, and—wonder of wonders—work has come my way! Although I now have to earmark the first $12,500 of income for health care (counting premiums and what it'll take to get to the safety of catastrophic coverage) I feel very fortunate to have a pathway where it's at least possible—all the while doing what I love.

Maybe there will not be as much disposable income left over for Susan and I to play with, but we'll do what we can, and we have each other. It's a pretty good deal.

1 comment:

Roger
said...

Something tells me you didn't sit down with a local SHIP counselor during last fall's open enrollment. I am not conversant with MN's medicaid program but it is worth checking out. Email me to setup a time to talk.

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About Me

I’ve lived in intentional community for 41 years: 39 years at Sandhill Farm (a small, income-sharing community I helped found in 1974 in northeast Missouri), followed by 20 months at nearby Dancing Rabbit, an ecovillage started in 1997 with a core mission of modeling how to live a great life on a resource budget that’s only 10% of the US average. Today I live in Chapel Hill NC, where I’m trying to pioneer a new community with close friends.
For the last 28 years I’ve also been integrally involved with the Fellowship for Intentional Community—a North American network dedicated to providing the information and inspiration of cooperative living to the widest possible audience.
Recognizing the value of what is being learned in intentional communities about how to solve problems collaboratively and work constructively with conflict, I started a part-time career as a process consultant in 1987. Today, I’m on the road half the time conducting trainings, working with groups, and attending events all over the country.
Recreationally, my passions include celebration cooking, duplicate bridge, wilderness canoeing, and the New York Times Sunday crossword.